Yesterday, we walked a three mile course through downtown Phoenix; an easy journey, flat, paved, clearly marked. There were about 3,500 of us. Many came as families, wearing specially-printed T-shirts with the names of a beloved family member printed boldly on the front. Many wore company logos. Young moms and dads pushed strollers, while others walked with dogs all dressed for the occasion with purple scarves or cute little doggie wear. Some walkers were alone like me, mostly women. Every one was there for a single purpose — to call attention to Alzheimer’s disease and to raise money for research.
Sadly, the journey for those with Alzheimer’s and their caregivers is not so flat and easily laid-out. For families dealing with the disease, there are bumps and hills and dips and many treacherous chasms to navigate. The nature of Alzheimer’s is that it is a long, slow and very, very hard slog for everyone involved. There is no simple three-miles-and-you’re-done stroll along a clearly marked and nicely paved street. No. In fact, the unstructured course of Alzheimer’s often takes years to complete and it’s an uphill climb all the way.
The first steps into a walk along the Alzheimer’s road usually happens only after every tactic of avoidance has been exhausted; when there is nothing left but the knowledge that someone you love — maybe even yourself — has become irretrievably different. Doctors are now indicating that Alzheimer’s begins to interrupt the brain as many as ten years before early outward symptoms are noticed. Then, it might be months or even years more before a diagnosis is made. For a disease in which early treatment can mean the difference between adding a few good years to the front side, knowing now that there may be years of silent diminishing isn’t exactly the best news.
One brave family had a simple question silkscreened on the front of their purple T-shirts: What if YOU lost your memories? The notion of losing our memories and our personalities, our dignity and eventually our lives to a slow brain-stealing disease is terrifying at best. Nearly every day we hear that scientists have discovered one more thing that DOESN’T work in combating or even delaying the symptoms of Alzheimer’s. Remember Ginkgo Biloba? Crossword puzzles? Red wine and estrogen pills?
The good news is that researchers are working like crazy, studying, performing trials and recording their findings, all with the hope of developing a cure. Even finding out what doesn’t work is like having hundreds of Thomas Edisons trying one thing after another with the scientific notion that at least things are being eliminated. Still, for millions of families, that one-size-fits-all little pill-o-cure is still not available and will most likely be too late for them when and if it is found.
And so we wait … and walk … and do our best to remain hopeful. We wear purple T-shirts and even butterfly wings and homemade ballet skirts just so we can gather the courage to step grimly into the knowledge that statistically a horrific number of our group of 3,500 will go on to develop Alzheimer’s ourselves. In the meantime, it seems we need to learn a lot about what it’s like to have Alzheimer’s and how to care for someone who very slowly loses who they are. Yes. It would certainly seem so.
Maybe it all comes down to the simple, yet terrifying question which that one little family had printed on their shirts: What if YOU lost your memories?
If you want better and clearly more scientific information than I can provide, consider cruising through the National Alzheimer’s Association’s website. And while you’re there, consider donating toward Alzheimer’s research. It’s a start.
